calvin's story

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8.08.2011

paradox

In epilepsy there lives a paradox that is both self-serving and counterproductive.

For children, men and women who have epilepsy, particularly those who otherwise enjoy good health and typical lives, there is an important effort to demystify and destigmatize the disorder. These people who suffer from epilepsy want to be seen as “same” rather than “other.” They do not want to be shunned, outcast, shamed or discriminated against. It is their goal, and rightfully so, to live full lives, to be included in society, to enjoy each day without feeling marginalized or avoided like the plague as has historically been the case.

In recent years these efforts, by people for people with epilepsy, have enjoyed some success, including the emergence of characters in movies with epilepsy appearing just as they are—normal folks, albeit some of whom wear helmets. People with epilepsy are speaking out and letting others know they are not to be feared, but rather embraced, just like anyone else.

On the flip side, this "normalization" of epilepsy and its impact on lives might risk impeding the progress of epilepsy research and advocacy. If the myth that epilepsy is a benign condition where you take a pill and everything is okay—normal—persists, we might have a harder time garnering the appropriate funding to find a cure.

So while some folks with epilepsy are enjoying seizure freedom with the use of devices, surgery and/or drugs, (don’t forget the drugs always come with distasteful side effects,) and are able to go about their daily lives, I am making a concerted effort to tell people about epilepsy’s horrors: the uncontrolled seizures, the repeated hospitalizations, the powerful mind-numbing drugs, the painful blood draws, the abhorrent drug side effects, the consequential developmental delay, the risk of sudden death in epilepsy (SUDEP) and death from related accidents such as drowning, the financial burden on society and families, the emotional toll on families, the shameful lack of pharmaceutical, public and private funding for better treatments and a cure, the pitiable lack of a prominent celebrity voice advocating for epilepsy education and research.

To be honest, epilepsy, particularly uncontrolled, is a disastrous, tragic condition not to be underestimated. It can strike anyone at any moment. There is no preventative lifestyle or diet. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. It just means doing one or two simple things.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time. It's as easy as pushing a button.

Love, Love, Love! As always...well written! This is why I am starting "My Epilepsy Story" We need the ones who are responding to treatment to speak for the ones who are not responding to treatment. My heart is for everyone with epilepsy and a cure for epilepsy otherwise all we are doing is just talking.....

My son Calvin was born six weeks early with significant neurological problems of unknown origin. When he turned two he was diagnosed with epilepsy, which eclipsed all other adversity he'd encountered. No drug or dietary treatment has completely controlled his seizures. I write about the challenges we encounter, and the great perspective about the world we gain as a result. I post something several times weekly in an effort to increase epilepsy awareness, dispel the myths, promote understanding and inspire empathy, all in hope of a cure. I sometimes write about politics, racism and other social injustices.